Does anyone ever wonder if the professionals REALLY know what is wrong with our kids?

[BusynMember]

I ask mostly because of my hard-to-diagnose daughter. She has had many diagnosis. on the school front and nobody still knows for sure and she has gotten different answers from different "top" professionals. I don't think they know or ever will know other than she is a "different type" learner.

As for Lucas (Sonic, who is now 18 so I guess I can use this name), he has had so many diagnoses, it's humorous: ADHD, ODD, ADHD/ODD, ADHD with autistic traits, bipolar disorder, Pervasive Developmental Disorder (PDD)-not otherwise specified, and finally autistic spectrum disorder. He has been on at least fifteen medications which none really worked and is better off without any and seems pretty Autism Spectrum Disorders (ASD) so I think somebody accidentially got that right, after 11 years.

Even me...I am 58. I was first, anxiety, manic-depressive, unipolar depression, bipolar II, neurological soft sign problems not otherwise specified, NonVerbal Learning Disorder (NVLD), and I fi nally figured out that every professional I went to missed the borderline.


How much do you think we should trust them? What do you do to sort out what is right and what isn't right? What about the medications? It bothers me that psychiatry is NOT an exact science and that there is no blood test to diagnose. It bothers me that ten doctors can give ten different answers. It botheres me that all the tests given our kids can be flawed. I would add...adults too.

How much do you trust your professionals?

Some other post made me decide to see if anyone was interested in venting over this very frustrating problem?

 

[InsaneCdn]

Given a difficult child that took... 10 years too long to get even close on the labels and on the interventions and accommodations?

On the surface, my trust level is way down.

In reality... it's a mixed picture.
School? hasn't got a single clue how to handle complex kids, and tends to react in destructive ways (such as treating all behavior problems as either attitude or bad parenting). Unless your kid fits one of their little boxes, they don't have a clue. And if another parent were to ask me about trusting school, either that there is a problem or that things are "fine"... I'd have to say that mommy gut overrides school 100% of the time.

Other professionals?
What do you do when the test your difficult child needed in grade 2, wasn't even available (in these parts) until he was in grade 8? This isn't even psychiatrist stuff... this was Auditory Processing Disorders (APD), where there are recognized testing strategies that are ACCURATE. Who do you get mad at????

All the pros waffled on the Autism Spectrum Disorders (ASD)/Aspie or not question... When we took extreme fatigue out of the equation, it became obvious that mommy gut was right (not there).

The tdocs wanted to move difficult child toward LESS attachment and more independence. What he really needed was to re-attach... what little trust we had in tdocs is gone.

psychiatrists? Well, we've had a good one, and she's been open and worked with us, but... didn't have any more answers on stones to turn over than we did. On the medications front, fantastic. Up front on side-effects, controlled in approach (and only changes one thing at a time). Has her own ideas, but listens to our case and will adjust. Treats difficult child like a real person. We still trust her for medications. But she's not a diagnosis source.

If I knew 10 years ago what I know now... I'd have found a way to force schools to treat difficult child as though he had Auditory Processing Disorders (APD)... back in grade 1. And I would never have found this board, because we would never have gone down that road. difficult child knew then. I knew then. But... nobody else on the planet had any clue that we could even remotely be on the right track.

If you fit ONE major diagnosis, your chances of getting the right diagnosis go up.
Otherwise?
<headshake>

 

[AnnieO]

What really gets me is when you tell a doctor the symptoms and they diagnosis the child with something that doesn't even fit.

Or when medication is having the exact opposite effect of what was intended, they double or triple the dose. (Put a kid on a stimulant, they start bouncing off the walls so you give them more? That's like giving espresso to someone who has had too much coffee to calm them down!)

Or when the docs just ignore parent input entirely. (They know the child OH SO WELL based on 5 2-hour visits?)

Jett has been diagnosis'd severe ADHD (not severe, perhaps mild, and stims were a disaster); Fetal Alcohol Syndrome (FAS) (never mind that the facial markers used to diagnosis this one are also seen in Asian/Caucasian children - which Jett happens to be - and he has an astronomical IQ and memory); nonverbal AND verbal learning disabilities (we see dyslexia that he seems to be overcoming)... And when I suggested Aspergers, the doctor said he could see why I thought it might be, and that he would take that into consideration but in the report SNEERED at the thought because clearly this was a case of Fetal Alcohol Syndrome (FAS) and severe ADHD.

Still think parents usually know their kids better than the docs.

 

[DaisyFace]

After the road we've travelled I've become completely jaded...

so I'm probably not the one to ask.

At the moment, it feels like MOST "mental health professionals" were actually clients who somehow got ahold of a white coat and a name tag...

 

[tiredmommy]

I figured out a long time ago that there is probably a simplified and eloquent answer to Duckie's issues. When the professionals figure it out? I'll let you know.
I look at it as the same thing as the parable of the elephant and the blind men:

http://www.jainworld.com/literature/story25.htm

And, I've learned to trust myself, somewhat, as Duckie's primary caregiver. These doctors and professionals are the experts of various disorders and systems but I am the expert on Duckie.

 

[keista]

The problem is that we are humans. By nature we need to quantify, qualify and categorize things. I think Americans more so than others. Unfortunately, it is very difficult to quantify, qualify and categorize human behavior, and personality. It is very often subjective. I just went over DD1's Autism Spectrum Disorders (ASD) evaluation results. It turns out that it wasn't the ADOS she doesn't fall, on, but the ADI-R. OK. Guess who filled that one out? Me. A person who was raised by an Aspie and who's first child is an Aspie and who's uncle is most likely an Aspie and who may not be an Aspie herself, but has tons of traits. IOW To me this is NORMAL. I have no recollection what questions were asked on that evaluation, but if it asked me to gauge if a behavior was within "normal" range or troublesome, I think I skewed the evaluation - ending up with a more "normal" result.

Most of these professionals have to make determinations based on what they see in the office and what a parent reports. How much do they really believe what the parent is reporting? How accurately is the parent reporting? and I'm not talking about parents being deceitful, but not fully thinking things out in the moment. How many times did someone ask you about your kids' behaviors and you said No, they never do THAT - simply because you never noticed. After leaving that appointment you start noticing THAT all the time.

I think that's the beauty of a forum like this. We have moms (dads too) that get to know their kids inside and out. They suffer through bad dxes just trying to find something - therapy, accommodation, medication, technique - to help their child fit into the world and function. Many eventually get to diagnosis's that make sense and work and can share this information with others. Some keep hunting as their children become adults and still can't function. Some of us recognize ourselves in our children or others children and can share our personal experiences.

I truly believe this forum is much more valuable a diagnosis resource than the pros we all rely on. We capture a much broader view all at once.

 

[Malika]

For me, an analogy would be when you have something difficult or painful, some dilemma, perhaps, that you want to share with a friend. There are people who will listen a while and then start chipping in with their views or advice, defining and analysing; with such people, one feels unheard, unrespected and stops wanting to share anything further with them. Then there are those (more rare) who will just listen without comment or judgement, and in the "spaciousness" of such open listening, answers start to reveal themselves. What is going on with a child with difficult behaviour is necessarily complex; jumping in to give one's own closed interpretation of that complexity with a label is, to me, unhelpful and sometimes simply perverse when it is repeated in contradiction to what the parent herself sees and knows. Tentative suggestions, offered with a sense of humility and the complete impossibility of diagnosing over the air waves, as it were - yes, why not? If the professionals are not to be relied on when they actually see, speak to and evaluate a child - well, I don't think people who cannot even see a child can be relied on more! That said, people on the forum have tremendously valuable experience and knowledge and we can all learn from each other. But, in the end, I agree with tiredmommy that we are the ultimate expert on our child.

 

[AnnieO]

LOL Malika, you have a point... The only caveat that should be added is... We DO see each other's kids... In our own!

 

[Methuselah]

Midwest, when difficult child 2 was in third grade, I took her to expert #N in a long line of experts. She gave her diagnosis as to why difficult child 2 steals without remorse for me to add to the long list of reasons given by other experts. I looked this woman in the eye and told her I don't care why she does it, just fix her. Rude, i know. The woman stared at me. I told her how tired I am of all the experts directly spewing their reasons she steals but not directly fixing the behavior. We got stupid reason after stupid reason...with difficult child 2 sitting their telling them everytime, "I stole it, because I wanted it." It killed my faith in behavioral medicine.

What really gets me is when you tell a doctor the symptoms and they diagnosis the child with something that doesn't even fit.

One of the experts I took difficult child 2 to showed me a picture she drew for him: a dog with a smile on his face, a sun in the corner with a smile on its face, all done in bright colors. He told me she may have bipolar. I stared at him. I said you look at this happy, normal picture and get that? He stared back. Time Magazine had featured in its cover that week or the week before bipolar in children. I told him I read that article, too. I was so ticked! It was like he didn't know where to put her, so he shoved her in the new category. Ugh.

Dr. George Simon has an article about how the simplest diagnosis is usually the best.

 

[tiredmommy]

Methuselah~ I removed the link from your post because some evil-doer attached a malware infection to it.

 

[Methuselah]

I'm so sorry!

 

[tiredmommy]

Not a problem; I'm on the Mac while scanning the easy child.

 

[BusynMember]

When Lucas was four, and we had only had him for two years, we took him to a psychologist (he was not yet legally adopted yet and we were forced to see this particularly "professional."). In front of Lucas, who had very good receptive language skills, he said, "Well, since he was born with drugs in his system, his MOTHER (not birthmother) obviously drank a lot and he must have some Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) (I am paraphrasing). There is NOTHING we can do about THESE kids! There is no point in coming back, but you may want to reconsider adopting him."

Yep, that's what he said.

Lucas does NOT have fetal alcohol syndrome or effects. He has none of the symptoms. Lucas also understood the man and was bawling, which didn't stop him from blathering. I whisked my baby out of the office and didn't take Lucas back for an evaluation for a LONG time, until he was legally adopted and WE could pick who he saw.

In spite of making sure we took him to top flight places with great reputations, they all had differing opinions. And when I brought up autism, they all said "Absolutely not." But Tom and I knew he did have it. So we worked on getting him interventions for his various delays...speech, low muscle tone, sensory issues, social skills. That was enough for us. He was getting a lot of intensive help in school without his diagnosis because he was so obviously in need of it. The progress he made in every are with all the help was mindboggling and heartening, but we had to keep pushing them to not discontinue his interventioins because improvement didn't mean he no longer needed the help to keep improving. We managed to win each round. It wasn't easy.

Years later, we took Lucas to a neuropsychologist (still my favorites) and this one was from Mayo Clinic. You don't get much "better" than Mayo Clinic. After testing my son for ten hours and reading his entire history and also reading all of the forms we both filled out on him, he said, "To the best of my ability, I diagnose this child with Pervasive Developmental Disorder (PDD)-not otherwise specified, a form of autism. But I want to be clear with you that no diagnosis is etched in stone. There are no blood tests. Any professional, even the best, can be wrong. MAYO CLINIC MAKES MISTAKES ALL THE TIME!" I really appreciated this man. He was bright, concerned, worked overtime on our child, and was something most diagnosticians are not...honest. There IS no way to be sure any diagnostician is right, unless it is a medical issue that can be tested for. And most of our children don't have issues like that. And I'm sure professionals ARE wrong all the time.

It so happened that this diagnostician seems to have diagnosed Lucas right and he has rapidly improved since being allowed to get continued autism-specific interventions. However, the diagnosticians before him were dead wrong, especially the jerk who said he should maybe not be adopted and other stubborn jerk who insisted on bipolar and gave our boy tons of medications.

After all Lucas has gone through, Tom and I were right as soon as we saw him rocking back and forth and making no eye contact and screaming during transitions. I had just finished reading a book about an autistic boy and this child had all the symptoms. Yet we were shouted down time after time.

Mom (and Dad) gut is powerful. We live with our children. It is a pity that so many of our children are denied school and community interventions (which are plentiful in the US, if you push to get them) just because some professional thinks they know more about your child than you do. I can't wait for the day when there are brain scans (no, I don't trust Dr. Amen) or blood tests to definitively locate the problems our differently wired children have so that they can get help in every country in the world...the right help.

I am very alarmed at how quickly doctors throw stimulants at three year olds who happen to be more active than other children. I agree with doctors from other countries that at least wait until age six or seven to prescribe them.

 

[SuZir]

I think the main problem is, that we still know so very little. Especially then it gets to how our brain function. We still basically know as much as our ancestors knew 5000 years ago. If you hit someone too hard to the head, their brains stop working. Okay, maybe little bit more but not that much. In fact we don't know much about many physical illnesses and whys and hows then it comes to them. And even less is known about why some drugs seem to be working to some illnesses and conditions. And when it comes to neurological and psychiatric problems it is basically in very large part just guessing and making categories. In those fields most diagnosis are based on behaviour. And often the behaviours is very similar in many totally different condition. And even more so with kids. And smaller the kid is, more difficult it is to know. They just react exactly the same way to many different things.

Ans as Keista already pointed out the information the professionals do get about the patient is incomplete and subjective at best. And sometimes it depends on circumstances. It would be very odd if for example boys who have born near the school cut off age do indeed have more ADHD than boys who are older then they start school. Especially then this seems to be true whatever month the cut off is, so it is not because of seasons. Still they do have much more diagnoses.

I kind of hope it would be possible to get kids help for what they seem to need, not for what their diagnose seems to be. If it seems like the kid needs help with this or that, they should get that despite any diagnose or none. It is also often with drugs, that they are more to help for certain symptom than certain condition. And maybe at times that should be enough. Of course there are also conditions that have that special drug for just that condition and then you of course need that diagnose.

Problem with all those diagnoses is also that it can easily become a self-fulfilling prophesy like these things tend to do.

 

[exhausted]

I think it is all so tricky. Kids are kids and have developmental issues. They change drastically and that is why some disorders are just off limits at certain ages. The field is riddled with disagreements and philosophy differences. Most professionals have areas of focus and tend to see what their focus is. They are overworked and do not spend the kind of time they need to to really listen. I also think that they feel a kind of urgency to "do something" from parents when we are major stressed, have waited forever to get in, and at our wits end. I agree about trusting your mommy gut. We know more than anyone and esp. when we educate ourselves. We have so many diagnosis-I don't know what is what with difficult child. Trouble is, interventions differ with each one.

 

[ceebee]

Me - mom and teacher
Son-16.5 - ADHD, ODD, Obsessive Compulsive Disorder (OCD), Asbergers, Learning Disability (LD), Gifted

I sometimes think that my son should be paid for all the initials after his name. I think professionals try their best, but I think there is such a thing as too many diagnoses.

 

[Wiped Out]

Hard for me to say. difficult child's first psychiatrist was awful, would listen for maybe 2 minutes to husband and me and not even talk to difficult child. on the other hand, difficult child's current psychiatrist is amazing! He always schedules us for the last appointment of the night and I don't think even once we have gotten out of there on time. He really takes the times to listen to husband, me, and to difficult child (not that difficult child ever has anything serious to say but he watches him and his moods).

He will discuss options with us and together we decide what to do whether it is to leave medications alone, increase, or try something new.

Last year when easy child/difficult child's and difficult child's graduations were scheduled for the same night (easy child/difficult child-high school, difficult child-middle school). difficult child's psychiatrist said if he wasn't out of town that night he would have taken difficult child to his graduation.

So...I do trust this guy, I know he is working hard and really cares about difficult child. Could he get something wrong? Sure, but so could another psychiatrist. This is one amazing psychiatrist and I feel so blessed to have him for difficult child's psychiatrist.

 

[InsaneCdn]

Me - mom and teacher
Son-16.5 - ADHD, ODD, Obsessive Compulsive Disorder (OCD), Asbergers, Learning Disability (LD), Gifted

I sometimes think that my son should be paid for all the initials after his name. I think professionals try their best, but I think there is such a thing as too many diagnoses.

Ceebee...
My difficult child? ADHD, mood disorder not otherwise specified (x2), Developmental Coordination Disorder (DCD), Obsessive Compulsive Disorder (OCD), Auditory Processing Disorders (APD), ...
and it all applies... without all the pieces, we got nowhere.
Got 1st one in grade 1... last one in grade 10.

I guess it depends on whether they all fit - and what you get back from the diagnosis.
ADHD, and mood disorders = medications.
Developmental Coordination Disorder (DCD) = technology accommodations and interventions
Auditory Processing Disorders (APD) = personal FM system / auditory trainer.

I guess he doesn't need the Obsessive Compulsive Disorder (OCD) diagnosis... but 1 out of 7 isn't bad (the other one, has been dropped)

 

[confuzzled]

in my opinion, the psychiatric world is no different than meterology---in which a weatherman wouldnt know it was actually raining until a raindrop hit him in the head.

i have virtually no trust in the professionals i've encountered. we've had actual professionals tell us that difficult child 2 will be a kleptomanic since she swiped a candy at a checkout when she was three, we've had ever variation of mood disorder, spectrum disorder, attentional disorder, now allergy disorder under the sun....

and in the end, it probably doesnt matter much.

like sonic, we use the interventions that help, and leave the rest. we are very lucky that in our school district we dont have to have an "autism" label or an "emotionally disturbed" label to benefit from interventions--a good iep meets the needs of the child, not the label. so we just structured things with a little bit from here, a little bit from there and its worked well for the most part.

we have a difficulties with medications, and sometimes i think we made things worse WITH them, instead of fixing all that was broken. no doubt in some cases medications are a necessity, but just like with our new allergy issue, i wonder what medically is missed--i'm not saying all of our issues are allergy related, but perhaps if we'd have KNOWN and dealt with THAT before psychiatric stuff there would have been a clearer picture. same could be said of vitamin deficiencies, hormonal issues, thyroid issues and so forth--how many kids get put into the psychiatric box because something else is missed along the way.

honestly, in a different decade, or a different world, i'd just have a weird, quirky nerd for a kid....

not one that needs 50 gazillion labels or medications or therapies to get over her weirdness.

and some days, i think i could live with that.

 

[BusynMember]

Lucas started out as "Other Health Impaired" because they knew he was not like the other kids, but he just had an ADHD/ODD diagnosis. and that doesn't automatically get you help. It was his extreme problems with learning in a typical learning environment and classroom that started up in fourth grade that got the educators concerned, plus Dad and Mom never letting up.

Once he got the Autism Spectrum Disorders (ASD) diagnosis that we knew he had, things really accelerated. It's ridiculous how much is placed on a label, even if the child's label applies. I know parents who never get the right supports for their children because they simply don't know how to do it...and the poor child suffers.

I think it is clear that many children are not "typical" kids. The problem is, with ten professionals telling you something else and the schools doubting the ten diagnoses, often nothing gets done at all and the child becomes a problem both in school (if he doesn't drop out) or in the community. I believe strongly that many of these "passed over" k ids turn to drugs, cutting, gangs, and even suicide in their angst and in many causes in my opinion that could be avoided.